Tweet
On the surface, study results suggest primary progressive multiple sclerosis and stem cell transplants do not mix. In the long-term 2011 Greek study (http://activemsers.wssnoc.net/showthread.php?t=460), the average time to failure for those with PPMS was only 1.5 years. But a closer look at the data reveals some critical finds and perhaps some hope for those with the least treatable type of MS. Let's parse the results.
11 PPMSers were treated with HSCT in this study (a treatment very similar to what I went through). Of those, 7 experienced disease progression before year 2, a 36% success rate--not good odds. But of those 4 successful cases, remission was long term, an astonishing 10 years or more. Why?
Of the 11 PPMSers, 3 showed active lesions on their MRI. After HSCT, two of the three have remained stable for 14 years (unfortunately the other case showed progression in the first months). Even though this is an extremely small sample size, 66% of this group saw dramatic stabilization.
What does all this mean? If you do not have active lesions, based on this study there is only a 25% chance this could put the brakes on your MS for a time (but likely no longer than a decade). This is a low success rate, but better than all other PPMS treatments currently available. That said, the expense and risk make this a far from ideal option--essentially a Hail Mary pass with overwhelming odds that it will get dropped (or worse, could get you killed).
But if you have PPMS with currently active lesions, based on this study you have perhaps even odds (or better?) at shutting down progression for years. For a form of MS that has always been deemed untreatable, that's hope.
Most if not all neurologists would shun this sort of aggressive, risky, and expensive treatment with such uncertain odds, and rightly so. But it has to be pointed out that those neurologists don't have PPMS either. If nothing else, this is certainly food for thought....
11 PPMSers were treated with HSCT in this study (a treatment very similar to what I went through). Of those, 7 experienced disease progression before year 2, a 36% success rate--not good odds. But of those 4 successful cases, remission was long term, an astonishing 10 years or more. Why?
Of the 11 PPMSers, 3 showed active lesions on their MRI. After HSCT, two of the three have remained stable for 14 years (unfortunately the other case showed progression in the first months). Even though this is an extremely small sample size, 66% of this group saw dramatic stabilization.
What does all this mean? If you do not have active lesions, based on this study there is only a 25% chance this could put the brakes on your MS for a time (but likely no longer than a decade). This is a low success rate, but better than all other PPMS treatments currently available. That said, the expense and risk make this a far from ideal option--essentially a Hail Mary pass with overwhelming odds that it will get dropped (or worse, could get you killed).
But if you have PPMS with currently active lesions, based on this study you have perhaps even odds (or better?) at shutting down progression for years. For a form of MS that has always been deemed untreatable, that's hope.
Most if not all neurologists would shun this sort of aggressive, risky, and expensive treatment with such uncertain odds, and rightly so. But it has to be pointed out that those neurologists don't have PPMS either. If nothing else, this is certainly food for thought....
Comment